living well with hereditary pancreatitis, type 1 diabetes, and pancreatic cancer​

I miss this blog when I’m pulled away. Lately, I’ve been pulled away by both good and bad things: work, holidays with families, a long road trip, quality time with my husband, and of course, chemo and its aftermath.

I also have a new protocol before chemo infusions, daily Neupogen injections for three days early in the week leading up to my Friday infusions. Neupogen is a bone marrow stimulant, which does appear to be boosting my blood counts well, so that my numbers are high enough for the next round of chemo. Unfortunately, Neupogen causes fatigue and really uncomfortable bone pain, like sharp stabbing pains in my hips, pelvis, and spine. It generally makes me feel like I’m coming down with a bad cold or flu, which certainly isn’t fun when I know I have to end the week with disgusting chemo delirium. Also, the needle gauge on my Neupogen syringes is tricky, and I often have to grit my teeth and slowly push the thick needle in against the resistance of my own belly skin. Let me tell you, that’s the sort of thing that easily gives one the heebie-jeebies.

Fortunately, though, I’m on a more regular schedule now with the FOLFIRINOX, going every 3 weeks instead of every 2. This gives my body more time to rebound and rebuild my blood counts, and it gives me a little bit of a reprieve in between rounds. Tomorrow will be my fourth round of FOLFIRINOX, after which I’ll have a CT scan and follow-up with my oncologist. That, finally, will give us some indication whether the FOLFIRINOX is working, or at least working well enough to continue. I’m looking forward to this scan because it’s even harder than I thought it would be to put myself through poison hell without knowing for sure that it’s actually killing my cancer. But I’m also apprehensive about this scan because there’s always a chance it could reveal bad news, and send me right back to the drawing board. I need to be prepared for another shakeup, just in case I do suddenly have to switch chemo regimens again. But as much as I hate FOLFIRINOX, I think I’d rather settle into a routine with it than have to start all over again so soon. So I’m just waiting out my scanxiety, tiptoeing through it one day at a time, until I finally have the next benchmark of answers.

And as I prepare to spend New Year’s weekend zoned out and miserable, sleeping and dragging my “baby bottle” of cloudy chemo around on my shoulder until the home care nurse comes, I’m thinking about what it means to bring 2016 to a close. In many ways, this year has been the worst of my life. For many people, in many ways, 2016 has been particularly awful. I sense that many of us are ready for it to be over, thank you very much, and are eager for even a superficial reset in 2017. And of course, for many, the new year always means resolutions. I think I only have two resolutions for 2017: 1) honor my emotions with honesty; and 2) spend more time with friends and family. These are the priorities I find myself prizing nowadays anyway, now that I can’t even begin to guess how much time I have left in this life, and now that every moment of pure existence (especially moments free of medical encumbrances, pain, and side effects) is a sparkling gift.

Even though, or maybe because, 2016 has been the worst year of my life, I know it will stand strong in my memory for a long time. I’ve already recounted here a lot of my most memorable experiences from this year, since my cancer diagnosis in January 2016. But there’s one moment in particular that shines bright in my memory already, and I don’t think I’ve told anyone about it before.

It was probably late February 2016, after I’d started chemo and before I was ready to return to work. It was in the middle of my worst stretch of pain, treatment side effects, difficulty eating, weight loss, and general wasting away. But, I was somehow able to take a nice, long shower on my own, which felt like quite an accomplishment, and which helped me feel even the tiniest bit refreshed. I played music on my phone while I was in the shower, probably the Future Islands station on Google Play Music. Once I got into my bedroom and started getting dressed, the Arcade Fire song “Wake Up” came on.

I first heard this song on the soundtrack to the film Where the Wild Things Are, one of my favorite movies. I’m a children’s librarian, so it shouldn’t surprise anyone that I LOVE Maurice Sendak’s original. I also love the indie hipster film adaptation, which is a bit controversial. About a year after I graduated college, I was working in child care at a fitness center chain, and one of my privileges there once I became a supervisor was to pick which music to play when we opened on Sunday mornings. Without fail, I’d put in my own copy of the soundtrack on CD, and jam out to the wild and weird childish yell-singing of Karen O and the Kids (Karen O from the Yeah Yeah Yeahs). Something about it made me feel carefree and powerful, edgy and whimsical.

The soundtrack ends with “Wake Up” by Arcade Fire, and when that song came on my streaming music station that February day, I found myself alone with all my emotions, and with maybe just enough energy to dance around, just a little. I wrapped my arms around myself (my shrinking, shriveling self) and swayed, bobbing my knees slightly. I stretched my neck and legs, gently easing my limbs around, testing the waters of my unfamiliarly frail body. Eventually, as the music picked up, I started to feel looser, warmer, and just a bit stronger. I mouthed along to the words, too winded to sing, and the lyrics hit me. The enormity of what life had thrown at me hit me full force in that moment, and I let myself feel the epic weight of my stage IV cancer. I looked up to the ceiling and opened my mouth in a silent wail. As tears rolled down my cheeks, I extended my arms and slowly turned in circles in my bedroom, bouncing slowly on the balls of my feet. I wept for myself, dancing half-naked and eaten away by cancer, hiding out in my room, away from the world and all its harsh realities. But I also wept with pride, because I was still alive, I was still a person, I was still myself. By the end of the song, I felt, somehow, that I could do it, I could live through cancer, I could come out on the other side, I could be true to myself through it all. And this memory stands out to me now, as I think back on the enormity of 2016, because what I felt in that moment is exactly what has gotten me through this year:

"Wake Up"Arcade Fire(selected lyrics)Somethin’ filled upMy heart with nothin’,Someone told me not to cry....If the children don’t grow up,Our bodies get bigger but our hearts get torn up....I guess we’ll just have to adjust.With my lightnin’ bolts a-glowin’,I can see where I am goin’ to be.When the reaper, he reaches and touches my hand....With my lightnin’ bolts a-glowin’,I can see where I am go-goin’.You’d better look out below.

I’d like to provide some clarification about my intentions in writing this blog. I’ve noticed a common thread in many of the responses I get to this blog, and to my story in general. Note: Nearly all of these responses are in person or through private messages (don’t worry, folks, commenting is encouraged here!). This common thread is pervasive throughout our culture, and seems to have deep roots in several religious traditions. This is also not anything new to me, it’s just become more and more obvious to me this year, since my cancer diagnosis. And it stands in contrast to my own view of my illness and the reasons why I share my experiences publicly.

In writing this blog, I am not asking for pity, or comfort, or attention. I am not even asking for commiseration. I do not write about the hardest parts of my experiences of illness with the hope that others will read these words and somehow share the burden of my suffering. I am not putting all this out here wishing that you will relieve me of some part of my tragedy, or pray away my grief, or even “bear witness” to my pain and misery.

In writing this blog, I am not asking for pity, or comfort, or attention.

And that is because, as a person with chronic illness, my life is not one giant tragedy. My days are not suffering end on end. I live a full, happy life with continual ups and downs, just like any other human being. I am living well with chronic illness, no in spite of it. It’s just that the facts of my reality might be slightly different than yours, and the vocabulary of my regular experiences might seem foreign to you. But just like every other “sick person” out there, I am not a walking tragedy.

Just like every other "sick person" out there, I am not a walking tragedy.

The view of sickness, especially chronic or life-threatening illness, as abject tragedy comes from many sources in many cultures, throughout history. This view is also deeply ingrained in us, from our childhoods and from the traditions we inherit. It only just occurred to me this morning that Christianity, the specific tradition that I come from, carries many beliefs that position sickness as pure suffering, a cross to bear, or grief that others can pray away. Don’t get me wrong, I really do appreciate when others pray for me, because it means, deep down at the core, that they care about me and think of me kindly. But I don’t think I believe that sickness is inherently something that others need to bear witness to in order to ease my suffering, or that I should ask others for intercession to relieve my pain. While these ideas give people a way to care for those who are sick or in pain, they also create a binary in which sickness equals bad and non-sickness equals good. I’m only just beginning to see the far-reaching repercussions of that binary.

My own spiritual beliefs fall closest to the Buddhist tradition, and I find a lot of peace in Buddhist practices. So, I believe that there is a difference between pain and suffering. Everyone experiences pain in different forms; it is a fact of the human condition. But suffering is what we control. Suffering is the individual’s reaction to the reality of pain. As Tara Broch writes, “pain is inevitable, but suffering is optional.” Within that schema, illness is pain, not suffering. Sickness will come and sickness will go. Some will know it and some will not. This means that sickness is not, in itself, a tragedy. The body is impermanent, anyway.

So, why do I write this blog, then? To advocate, to normalize, to search for solidarity. Because I believe that people with chronic illnesses are not walking tragedies, I want to advocate for all of us, within the culture and traditions that so often respond to us only with pity. I want to raise awareness about the reality of illness, the truths that 117 million people in the U.S.* alone live with every day. We are more than our illnesses, but our experiences of illness still deserve to be talked about. If we don’t talk about these realities and try to normalize them, then how can our society view our experiences as anything but tragedy? To work to normalize chronic illness is to work to give everyone with chronic illness dignity and acceptance. After all, there is nothing wrong with us, really. We are just like everyone else. But there are still so many forces working against us, and so many of our everyday truths are still things that only those with illness understand. So solidarity between those living with chronic illness can help us feel better about ourselves, and not let those cultural traditions that see illness as an aberration or a burden overcome us with grief and self-pity.

So, why do I write this blog, then? To advocate, to normalize, to search for solidarity.

This means that I am asking you, dear reader, not to read about my experiences and think, “Oh no, well at least I can bear witness to her suffering.” I am asking you not to see my life as sadness and tragedy, but as simply a regular human life. I am asking you to share these experiences with me so that we can all work to normalize illness in our society, and advocate for the dignity of all those who live with chronic illness. Let me close by quoting the final paragraph of my own first blog post:

“If being sick is a core part of my self (which it absolutely is), then I cannot allow my sickness to be a negative force in my life. Self-respect and self-worth lead me to honor my sickness as simply my reality, not my burden or my shame. That doesn’t mean it’s all pretty, but that does mean it’s all true, and it’s all worth sharing.”

I have two younger brothers, both of whom are in good health. I feel only positive about this, and the fact that they are both healthy makes me very happy. I think sometimes about what would happen if either of them were injured or got sick, or if they developed any form of any of my chronic illnesses. Honestly, it would break my heart. I think their good health is a source of stability for me, something steady I can count on. But that’s probably unfair, because I wouldn’t want them to feel guilty for me if their good health ever changes. And there is so much guilt and pressure wrapped up in good health and ill health and the state of our physical bodies - not just for families of someone with chronic illness, but especially so.

My middle brother, who is about seven years younger than I am, called me recently to discuss a fundraising race he wants to run in the spring. He lives out west, where he’s able to do the outdoor adventuring that he loves. I consider him an athlete, although he doesn’t actively play one sport on a regular basis. He told me that he’s getting back into running, and he wants to take the opportunity of running this race in Idaho in the spring to raise money for a nonprofit connected to my health. He asked my opinion on which organization to fundraise for, and between the National Pancreas Foundation and the Pancreatic Cancer Action Network, we decided that PANCAN has easier options already set up to match what he’s trying to do. I thanked him for considering me in these plans, and for dedicating so much of himself to supporting organizations that are working hard to support me and others in my position.

He told me that he’s been thinking a lot lately about our genetics and what it means that he got lucky while I didn’t. He said he wants - maybe out of a feeling of responsibility or calling - to be able to put his good health to use, for causes related to everyone’s health. This is admirable. I can imagine that being so closely connected to illness while being personally healthy and fit might make one think a lot about luck and good fortune and whatever else you want to call whatever it is that determines these things. It’s true that both of my brothers could potentially carry the same genetic mutation I do, even though neither of them has manifested any evidence of the disease associated with that mutation. The fact that neither of them has, past the age of puberty, means it’s more likely that they don’t have this same mutation. But there’s no way to know unless they get tested, which isn’t clinically necessary. Similarly, there’s no way to know whether this mutation started with me, de novo, unless both of my parents get tested for it, which is also not clinically necessary (or covered by insurance). So we all live with some mystery, and make assumptions and decisions based on the clinical evidence presented. That’s really all anyone can do.

I don’t know what it’s like to have a sibling with chronic illness, especially in childhood. Over the past year, as I revisit my childhood experience of illness and reconcile that with new developments in my current health, I’ve thought about what it must have been like for my brothers when we were all kids and I was sick. When my hereditary pancreatitis first manifested, with acute pancreatitis when I was nine, my middle brother was about a year and a half old and my youngest brother wasn’t born yet. So, essentially, they both have known me to be sick their whole lives. I know this impacted them, at the very least on a logistical level, as I had so many doctor appointments and medications and spent time sick at home. Throughout it all, my parents had to divert attention to me, which I'm sure sure affected my brothers. Especially for my middle brother, my early illness directed the course of his young life to some extent. While I was in and out of the hospital for months at the beginning, he went to stay with our aunt and uncle in the next state, so my parents could be with me in the hospital. He may not have noticed or minded this much, being so young, but I’ve studied early child development enough to know that everything impacts a person’s development between the ages of zero and five. We are all fortunate that we had loving and generous family close by to help out, and there are many ways in which my parents and I got through those early experiences of my illness because of the kindness and goodwill of our “village.” I don’t know, though, what this experience meant for my brother, and he might not really know either.

And now both of my brothers have to live with the fact that their sister has cancer, and at a young age for all of us. I don’t know what this is like, either. But I know that they have both been there for me in very significant ways since my diagnosis, and this means a lot to me.

My grandfather commented on my last post that he doesn’t like to say that he’s “blessed” with good health because “that implies that those who don’t enjoy good health are ‘cursed’ with bad health.” I agree completely with this sentiment, and I don’t feel that I have been either cursed with bad health such as pancreatic cancer or blessed with the good fortune of avoiding death so far and finding success in my treatment. I believe that these things just are and we can’t control what happens organically to or in our bodies. No one is to blame for these things. There is no point in looking backwards, trying to trace lines of cause and effect for “fortune” or to find “reasons” why “bad” things happen to “good” people. Life just is.

​I’d like to close with two quotes from my favorite Buddhist teachers, Pema Chödrön and Thich Nhat Hanh. I know Buddhism isn’t for everyone, but I find a lot of comfort in it:

“Letting there be room for not knowing is the most important thing of all. When there’s a big disappointment, we don’t know if that’s the end of the story. It may just be the beginning of a great adventure. Life is like that. We don’t know anything. We call something bad; we call it good. But really we just don’t know.”-Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult Times

“If you can accept your body, then you have a chance to see your body as your home. You can rest in your body, settle in, relax, and feel joy and ease. If you don’t accept your body and your mind, you can’t be at home with yourself. You have to accept yourself as you are. This is a very important practice. As you practice building a home in yourself, you become more and more beautiful.”-Thich Nhat Hanh, How to Love

2015 was a year full of medical complications for me. Not that 2016 has been any different, but at least this year, there are less unknowns. In 2015, I faced pancreatic pseudocysts, persistent biliary strictures leading to jaundice (that went undiagnosed for too long), increased pancreas pain, four ERCPs (endoscopic retrograde cholangiopancreatography), and hospitalization from what looked like liver abscesses. After that week in the hospital in November, I went on heavy-duty antibiotics for about seven weeks. Once that course was finished and Infectious Diseases declared me highly likely to be infection-free but a CT scan showed that the spots on my liver had grown, my gastroenterology surgeon, Dr. Hirose, decided it was time for a biopsy. That liver biopsy was a traumatic experience in and of itself (one that deserves its own post).

During the week I waited for my biopsy results, I was lost in a miasma of fear. Anyone who has waited for biopsy results knows the feeling. For me in particular, there was a sharper, somehow more personal fear than if I had been in danger of any other kind of cancer. For example, if I had been waiting for biopsy results for possible skin cancer, I would have felt very differently than I felt waiting for biopsy results for possible pancreatic cancer. Of course, we didn’t know at the time what type of cancer it could be if it was cancer, but all signs pointed toward pancreatic cancer. Also throughout 2015, I had been in consultation for total pancreatectomy surgery at Johns Hopkins’ special clinic for this procedure, where Dr. Singh explained to me my theoretical risk of pancreatic cancer.

Patients with SPINK1 hereditary pancreatitis are known to have increased risk of developing pancreatic cancer. However, the particular risk for different genetic markers of hereditary pancreatitis is not always known. While there has been enough research on the PRSS1 mutation to know that it carries a very high lifetime risk of pancreatic cancer, there is not yet enough data to quantify the cancer risk for my mutation, PN34S. I think I remember Dr. Singh saying, as he literally sketched out these complex ideas on the paper exam table cover, that my lifetime pancreatic cancer risk was likely somewhere between 4% and 60%. This is a huge and vague range, but the numbers were concrete enough to bring the idea home to me: there was a very good chance I would develop pancreatic cancer at some point in my life. That’s why I was determined to pursue total pancreatectomy, my only chance of eliminating that risk. There was no way to know at the time that my risk was actually 100%. It’s even possible that I already had pancreatic cancer when Dr. Singh and I were discussing my risk in abstract terms.

So after my liver biopsy, I sat in waiting for a very personal, very real fear to come true: that my pancreas, which had literally sickened me for so long, could turn so very ominous. Since my diagnosis with pancreatitis at age nine, I have had a very complex relationship with my pancreas. It’s not even a love-hate relationship, which would make sense given the circumstances. Rather, it’s something more like a vaguely confused attachment. I’m sure people expect me to hate my pancreas, or at least to wish it gone. While I have certainly wanted it out of my body for over a year now, that desire has always had to push past my deep connection to my pancreas. Childhood illness has taught me to respect and value all parts of my body, because each organ and gland really does do incredible work every day to keep me alive and functioning. But the gland I feel the deepest attachment to will always be my pancreas. We are in this together, she and I.

But for that week of waiting in January 2016, I couldn’t quite stomach the idea that my pancreas would do something so horrible to me. It felt like a betrayal, and I didn’t want to think that my beloved partner organ could go rogue in such a big way. I thought I had tried to care for her, but now I wondered whether I had taken her for granted, or unwittingly thrown too much difficulty her way. Maybe my eight and a half years without pancreatitis symptoms (which had ended sometime in 2014) had left me lazy. Maybe my recent paleo diet had funneled too much fat through my gut to my beleaguered pancreas. Maybe I hadn’t thought of her enough lately, so she had retaliated. I’ve read enough cancer memoirs already to know that I wasn’t alone in feeling this kind of searching regret and bodily guilt.

More than anything, though, I didn’t want to follow my pancreas down this new road. I felt she was trying to lead me into a long and dark underground tunnel that I might never escape from. And I’m claustrophobic. At times I felt angry, thinking how dare she try to hurt me so much, how dare she try to pull rank. At other times I felt helpless, dwarfed in the shadow of my all-powerful pancreas. As it turns out, she just might hate me as much as I love her. She may have had it in for me all along. Or maybe she’s just as desperate to stay alive as the rest of me is.

Most of the time now, in spite of her supreme power to rule my life and health, I like to be sweet and gentle to her, to imagine her shriveled and shaking inside my upper abdomen, nestled against the back wall, just trying to make it.

Tonight, for the second time, I attended a local event put on by an integrative wellness center, hosted by a yoga studio. It’s a gathering of several practitioners, with their tables circling an altar in a large open space, and clients drifting in and out. The proceeds go to a different local nonprofit or community organization each time, which can really mean a lot here in Baltimore. At both of these events I've attended, I’ve been struck by the peace, the gentleness, in a room full of people gathered together for healing.

The only light comes from candles and the summer sunset, someone plays a singing bowl every few minutes, and the whole room smells like burning sage. There are crystals and essential oils scattered over a blanket on the altar, with meditation cushions surrounding it. People filter in and wander to a spot around the altar, then pick up a crystal or two or add their own, rub a little of an oil into their hands, and quietly rest in this circle until it’s time for their session. It’s calm. Everyone whispers. Everyone smiles slightly at each other, but no one tries to make conversation. We just let each other be. This is one of the most comforting and caring environments I’ve ever experienced. It feels like a place, a space, a moment where I can really heal.

The practitioner I’ve seen both times does integrative body work, which I don’t understand, but which I appreciate greatly. In the simplest terms, it’s a gentle massage. Maybe one could even call it a laying on of hands. Her hands are warm with energy, and I can feel it vibrating, almost shimmering. She holds my skull or swivels my arm within my shoulder joint, and I shift, for those few moments, into a different plane of awareness. It’s like simultaneously being fully present in my body and fully surrendering my body. I try to concentrate on my breathing and stay mindful in each moment, sensing my energy as she moves it around. This makes me feel totally focused on my physical self, every sensation of my flesh and blood. But in order for her to move and heal my energy, I have to let go of my own muscular agency, I have to let her pick up my leg and move it independent of my own physical will. This double consciousness is incredibly helpful to me.

In Eve Ensler’s memoir, In the Body of the World (which I will quote continually), she describes how cancer brought her into her own body, and pulled her away from her coping mechanism of detaching her mind and emotions from her physical self. Suddenly, she could not help but be aware of her body. Suddenly, she had to learn her body, pay attention to it, take care of it, and sometimes watch it wither in severe sickness. Her writing is shockingly visceral, and she does not shy away from the often gruesome realities of advanced uterine cancer.

I first read this book in the summer of 2015, before my own cancer diagnosis, but in the middle of the string of complications that led up to my diagnosis. Pancreatic pseudocysts, several painful endoscopic procedures, jaundice from a blocked bile duct, and the eventual metastasis of my cancer into my liver (masked at first by liver abscesses that landed me in the hospital for a week) left me feeling lost within my pain. I was hyperaware of my own physicality, but scared of it at the same time.

Maybe, when you have chronic illness from a young age or for a long time, you become adept at tuning in to your body. I have trouble remembering any time in my life when I did not know exactly what my pancreas felt like, deep inside my abdomen, or when I could not identify and describe the exact nature of my pain. Unlike Eve, I sometimes felt too present within my body. But this bodily awareness did not inherently mean I was mindfully present, or that I tuned in to my body with love and compassion. Often, it has meant that I fixate on negative or painful physical feelings, and react with anger and self-rejection as soon as I notice them. I habitually tune in to symptoms, not sensations.

So for me to be able to let go of my body while also feeling it on a deeper and more positive level is a true gift. I think it might be my source of healing. I also think there must be a way to access this more often, and on my own. I have not found it yet, but I will report back here if I do.